Feeling blue

Tonight, there is a programme on BBC2 about autism. I think it's important for us to watch it (me in particular, I think Tim might find it upsetting) & I think it's great to raise awareness of autism. But I've just watched 3 clips of it on the BBC website & feel really sad.
Some of the teenagers featured have severe autism and are non-verbal. I am sooo sooo desperate for River to be able to talk. If someone told me River won't talk until he's 4, that's fine. I could cope with that. But not knowing if he'll ever talk is such a massive fear for me. I know there are so many parents whose autistic kids are non-verbal & cope brilliantly, but to me it just feels awful. The one bit of speech River did have- "baa baa baa" - he's now lost.
In every article I've read, when asked whether they'd change their child they always say no. "If someone told me they could take away my child's autism, I wouldn't want them to. It's part of who they are."

But I would. Don't get me wrong, I love River's quirks & personality and love him for who he is but I feel so sad that he is going to face certain struggles that others won't, & will be judged by people. I don't want him to be a social butterfly, but I don't want him to be scared of people & distressed by the mere presence of other people. And I don't expect him to enjoy every minute of life- who does?- but I don't want the world to be a confusing & scary place for him. Does that make me a bad mother? I feel so bad that I want to 'change' something about him.

Another thing that I feel terribly guilty about is when I look at him, I see autism. It's the first thing I see. And it's constant. Everyone says to me, "He's still your wonderful little boy" &  "Don't forgot to enjoy him just for being River." And I so desperately wish I could.
It starts as soon as I see him in the morning. I open his bedroom door & say, "Hello River! Hello!" whilst waving (in an attempt to teach him to wave!) & he just stares into space, as if he hasn't heard me or seen me. That's because he's autistic, I think. I pick him up, he still hasn't even looked at me or acknowledged me- that's because he's autistic, I think. I attempt to take him downstairs, but if I try to walk past my bedroom he screams. He HAS to sit on my bed & watch a Thomas DVD before he can face going downstairs. That's because he's autistic. Whilst watching the DVD, he cimbs off the bed & runs up & down our bedroom flapping his arms. That's because he's autistic. We eventually make it downstairs & I give him some toast on a plate. He upturns the plate & spins it. That's because he's autistic. He carries the toast, handful at a time, & places it in a pile on the Examining Chair (armchair.) That's because he's autistic. He then eventually eats the toast, whilst staring out the window out of the corner of his eye. That's because he's autistic.

And this is all before our day has started.

I desperately want to think, "That's because he's River. It's just what River does." But I can't. Autism is always there first. Will my mindset better over time? Will it get better once we've got a diagnosis & can move on? Or am I a bad mother & am always going to think like this?

Who bloody knows.

And it's raining today.

A magical moment

The most amazing thing happened yesterday. River kissed me for the first time.

I've waited 21 months to have those cute little lips lean in for a kiss and yesterday morning, when I asked "Mummy kiss?" he looked at my mouth and placed those lips on mine.

At risk of sounding melodramatic, it was honestly one of the best moments of my life.

Plodding along

So I don't have much to say, but fancied writing about the day-to-day stuff.
We've had a few small breakthroughs in the last couple of weeks- first off, River has been looking at books! I was starting to think he'd never want to look at books but then out of the blue he brought one over to me & wanted me to hold it whilst he turned the pages. He wasn't interested in me reading it, but it's still a big deal to us! He's also starting to remember/understand a few more words. This weekend, I said,"River-raspberry? Raspberry?" and he leaned into me for me to blow a raspberry on his neck! All the constant repetition is paying off. Also, when we sing & sign "The Wheels on the Bus" (we do this twice a day, before naptime & bedtime) and sing "the wipers on the bus go..." "the doors on the bus go...." etc, he will move our hands so that we do the correct signing, which is great!

The things that aren't so good- the one sound that River had been making was, "baaa baaa baaa" during Old MacDonald. He had been doing this for about two weeks, but hasn't done it for maybe a month/six weeks now. Losing or regressing in speech is not a good sign. Also, whenever anyone comes into the house-whether it be a stranger or a familiar friend- River cries and runs to the conservatory door & takes ages to calm down. He also gets very, very upset if another toddler plays with certain toys or makes certain noises.
He's also showing more ritualistic behaviour- he likes to 'gather' similar objects, so he will unstack his stacking boxes and move them one by one onto the armchair, then throw them off again, then get three matching tupperware lids & spin them repeatedly, then 'gather' them onto the armchair. He still refuses to sit at the table or keep any food in a bowl/plate- if he's at the table, he goes crazy as he needs to 'examine' the food on his armchair. If I put a bowl/plate of food ie toast, raisins etc on the living room floor, the food is instantly emptied out, the bowl is spun on the floor, & food is scooped up and he runs with it to the armchair, where he gathers it into a pile & then eats it.

A bit about the armchair- we've nicknamed it River's Examining Chair, as everything- new toys, food, everything- gets taken to the armchair to be inspected and examined. We try to discourage people from sitting on this armchair, as a)it's River's safe space, and b)It's constantly covered in crushed breadsticks, toast crumbs, and the odd raisin. Gross.

I've also been researching the link between food & autism- there are lots of success stories online about the GF/CF Diet (Gluten Free & Casein Free.) Apparently people with autism are effected by these food groups, & there are many people who claim that after cutting out pasta, oats, bread, wheat cereal, milk, butter, cheese, whey, lactose etc- that suddenly their child could talk for the first time, stopped stimming (flapping arms) pointed, waved. So part of me thinks- if there's a chance of it helping River, shouldn't I give it a go??
But there are others who say it's had no effect. The NAS website says that research shows the most effective cases are the ones where the children have problems with their bowels (it's very common for children with autism to have regular constipation or diarrhoea) which isn't something River has ever suffered with badly.
That's about it for now.

Just an update

Well after our paediatric appointment last week, I slept on it, & woke feeling much more positive. 

The way we started to look at it was that if River had seen the doc that we were down to see (who isn't an autism specialist but can still diagnose autism), he may well have sent us away for 3 or 6 months, yet kept us under his care- however, because we only saw a registrar, we are now being referred to the top dog, the main specialist who we probably wouldn't have ever met otherwise. Which is good!
I didn't want to get to the autism specialist's appointment in 3 or 4 months & risk her still not having the Ed Psych's report, so I discovered  her email address, scanned our copy of the report, & emailed her a copy. I also included a copy of River's autistic traits (I'd given a copy to the registrar last week but just in case it gets mislaid I thought it best to provide an electronic copy.) I thought at the very least, she will have all the necessary documents about River for our appointment & at the very best, she may read them, be very interested in seeing River as he's so young & try to fit us in sooner if she had any cancellations.

However, today I received an appointment letter: an appointment for yet another registrar (not even the autism specialists registrar.) For September. So instead of seeing the top dog in 3-4months like we were told, we are seeing another registrar who won't have any ability to diagnose, in 5.5months. Who will of course need to refer us to a doc who can actually diagnose, which will again probably take another few months.

It is just sooo bloody frustrating! 


We think River is on the spectrum, so does the Ed Psych, so why can't we get seen by a Paed that can actually do something?? So I called our Ed Psych (have I mentioned yet that she's lovely?) who said they are probably very nervous about putting a lifelong diagnosis on a child at such a young age, but said my best bet was to speak to my GP to try for a direct referral to the top dog.Which is a pain in itself, as our surgery have just assigned us to a new GP that's just joined so I have a telephone appointment with her next week & will have to tell her all about River from scratch so that hopefully she'll refer us. 

Nothing is ever simple!

We've also got an appointment through for River's hearing test in May, & a letter accepting him for Occupational Therapy so we'll hopefully get an appointment for that soon.

Whilst chatting to the Ed Psych I asked her about nursery- children with special needs can get free nursery hours from the age of 2 instead of 3 which means River could start at pre-school in September. So really, I need to decide- do I keep him at home until he's 3 as originally planned, OR do I send him when he's 2, so that it can be a very gradual process- maybe an hour a week at first, then 1 morning a week, gradually building up. River isn't good with change & adapting, so it will be a slower transition for him. But he's still so little- I know lots of kids are in a nursery from a very young age but I've always spent all day every day with River! Then we need to decide- do we try to get him into a special needs nursery with nursery workers who are experienced with his needs, OR do we send him to our village nursery who openly admitted they have zero experience of ASD? Thankfully the Ed Psych was thinking exactly the same as us-earlier nursery would be best as we can gradually get him used to it. Also, we're steering towards the village pre-school as he will be surrounded by 'mainstream' kids who will stimulate him more & encourage him to learn to turn-take, mix with kids, share etc, also it's a familiar setting as the nursery playground is open to the public so we use it lots, and the fact they don't have any experience is almost a bonus as they'll have no pre-conceived ideas about River, autism etc & will be open to getting training, plus we'll get funding for River to have one-to-one support.

We also had the health visitor repeat her assessment this week, last done at 18 months. River has made improves in two areas: Visual was 3 months, it's now 6 months. Speech & Language was 3 months, it's now 10 months. It's still way off 21 months but it's an improvement which is great :)

Yesterday, we started the Brainwave programme which is exciting. However, we've recently been told that the Ed Psych/Portage are starting a new home-based programme for young children with ASD/ social & communication difficulties. They would like to start this with River in June, but wouldn't want River to do that & Brainwave. So we'd need to choose. I feel soooo lucky that we have these things to choose from but it's a tough decision. So we're going to do the Brainwave programme for 6 weeks, and see how River reacts to it, then decide.

Also, called DLA about our application, they received the GP report on 29th & can take up to 12 weeks to make a decision. Great.

So that's what's happened this week. 

Funny Sort of Week- Part 2: Disappointment

Earlier this week we received the Educational Psychologist's report which was fantastic. The Ed Psych had written such an accurate account of River & since the assessment was made at home she had been able to see the 'real' River if you like. A copy was sent to the Paediatrics department ahead of our assessment today.

So our long-awaited Paeds appt finally arrived, 3 months after we were referred, & today we headed off to Musgrove. We've been trying to prepare ourselves for it over the last few days but it's been so hard to know how to prepare. Since it's quite rare to diagnose before the age of 2, we had to be prepared for them sending us away for a few months. On the flipside, there was a chance of River being diagnosed on the spot- I know a couple of people whose children were diagnosed before 2, & the Ed Psych said that she was aware that the doctor we were seeing had diagnosed another boy of a similar age to River. I'd googled the doctor & he seemed pretty good.

So- we arrived at the hospital & River was weighed & measured (being stripped of all your clothes & held down on a cold surface to be measured isn't enjoyable for anyone, & River certainly wasn't impressed by it!)
Then the doctor called us in. Except it wasn't the doctor we were told we'd see. Hmmmm, I thought.

So he asked about our concerns, & I gave him a print-out of River's autistic characteristics & discussed everything. I said that we were 100% sure he was on the spectrum. The doc listened to his heart, checked his knee reflexes & measured his head. He then told us that his weight, height & head measurements were all in sync. Great. I could tell that from looking at him.
He then said, "I see you've seen the speech therapist." "Yes, & the Ed Psych. You should have her report too," I said.
"Erm, no, it doesn't look like we do. I'm sure it'll be with us in a few days."
Bloody great. They obviously have it as we've received our copy. So the one person that really 'got' River & seems to be on our side & actually agrees with us, & the Paed hasn't even looked at her report. I'm annoyed with myself for not taking our copy- but it never crossed my mind that they wouldn't have it.

He then went on to say that he completely agrees with our concerns, & would agree that River has a significant speech delay & some behaviours that are a cause for concern. He said that there are certain assessments that they would need to do before diagnosing that River is too young for & would need to grow before they did them, & for that reason they would not diagnose until 3.

3. 3 years old. 3 bloody years old. So after initially suspecting autism at 15/16months, we'd then have to wait double that time (and then some) before a diagnosis.

This is when I got a bit emotional (I'm annoyed at myself about that too- I wanted to be calm & collected but instead was crying!) & I basically said, "I understand that you want to be sure before diagnosing, but I am sure. I have spend hours upon hours researching- not just autism, but sensory processing disorder, ADHD, development delay- and I know he's on the autistic spectrum. It is possible to diagnose before 2. Even if his development improves, it will not cancel out his autistic behaviours. Everywhere you look screams about early intervention, but when we try to get early intervention we're told to wait?? "
The doc then seemed to feel a bit bad that I was crying(!) & said something along the lines of, "It's not that I don't believe you at all, we just want to make sure that he gets the right diagnosis as there are many similar conditions like SPD, development delay. (yes, I know I'd already told him I knew about them & don't think River falls into that category) I can see that River does have major development delay (hang on, I thought you said speech delay, now you're saying major development delay?) so I will refer River to our autism specialist as autism is what she sees every day, but to diagnose we would do a joint assessment, it wouldn't just be a Paediatrician."
"Yes I know, we've also had the Ed Psych & Speech Therapist see him."
"Yes, I'll hopefully get the Ed Psych report soon."

Grrr. I knew he would need a multi-agency assessment before the diagnosis, & that's why I self-referred to speech therapy. That's also why I self-referred to Portage for the Ed Psych assessment. That is why the Ed Psych thought River may get diagnosed today- because the other assessments had already taken place.

So I asked him how long it will be before we can see the autism specialist. "At least 3-4months."
We've already waited 3 months for today's appointment! And for what? To be told that he's a healthy weight & height? Fantastic. Today, we should have seen somebody with the ability to diagnose. Instead, Tim has had a day off work and we've gone through the emotional turmoil of preparing for a diagnosis, all for nothing.

We need a diagnosis. There is help available for River without one, but having one will open a few extra doors for him. And- perhaps more importantly- a diagnosis will help Tim & I accept it, realise it's not all in our heads, realise that the way he is is down to genetics & not our parenting, & can get our sadness out of the way & focus on the positives. Whereas now, we're having to focus on the negatives all the time to 'prove' that River is autistic when we're desperate to focus on the positives & show everyone how amazing River is. Xx

Funny Sort of Week- Part 1

This was always going to be a funny sort of week & a bit of an emotional one, as Monday & Tuesday was due to be the Brainwave assessment & Friday is the long-awaited paediatrician assessment.
Our two days at Brainwave were supposed to be 9:30-4:30, but River naps 1:30-3:30pm (closer to 2-4pm since the clock change) & will only nap at home in cot in blacked out room. The therapists seemed a bit thrown by this, although I did mention it when booking the assessment & I'm pretty sure most toddlers River's age still have a long nap after lunch. They initially wanted us to come back for 4pm to discuss their findings from the assessment but later agreed it would make more sense for them to visit us so that River's routine isn't disrupted.

So the day started with taking a history of River & discussing his strengths & weaknesses. River wasn't really interested in any of the toys in the room & there wasn't space for him to run around so he started to get agitated, so he got through the next hour with constant snacks (food is the only thing that will distract him when in an enclosed space with nothing to spin!) We then had a break whilst the therapists chatted about River & River ran around outside.

We then all went into one of their large therapy rooms, & this is where River went downhill. There were lots of toys & bright things but River wasn't interested in any of them. The therapists wanted to try out a few physical exercises with River, but he just wanted to cling onto me or Tim the whole time. I found a couple of wooden shapes that were like CDs, & he briefly was happy to focus on spinning them. However, after around a minute of that he was then standing by the floor-to-ceiling windows crying to get out. When I tried to pick him up he just climbed up me & pulled my hair, he was so overwhelmed & panicked.

It was quite obvious that River wasn't going to co-operate with any of the exercises they wanted to try out on him, so we moved into the sensory room. River LOVED their sensory room, he did on our initial visit too. The lights are turned off, the floors & walls are padded & there is a large colour-changing bubble tube in the corner that River was transfixed by. He went very quiet & kept his face very close to the bubble tube for ages, which gave us time to chat to the therapists. There was also a little bit of space for him to run up & down & 'stim' (arm-flap, open & close fists) which helped.
After maybe 30mins, he got frustrated & anxious again. So out came the food again which calmed him- so by 12:30 he'd had a bowl of cereal, about 10 grapes, a large apple, a banana & 2 rounds of tuna sandwiches! By around 1:15 he'd had enough so we took him home for his nap. God knows how he'd have coped if we'd attempted the whole day!!

The therapists then came to our house an hour or two later to discuss their conclusions & talk us through River's 30-minute-a-day programme. They felt that it is his sensory issues rather than any possible autism that needs working on. They explained that one of the main reasons for all the running he does is because he has a lack of awareness of where his body is in space, so there are lots of exercises to increase his body awareness like body brushing & joint compressions that they hope will help with that. There are also exercises designed to stop him toe-walking (although he only walks/runs on his toes when he's excited) & some object recognition exercises.
We were due to go back the following day to be taught the various exercises but unfortunately one of the therapists had another appt & the other wasn't feeling very well, so they are coming round for a home visit next week instead- which will actually be much better for River as he really didn't tolerate being at the centre.

Only time will tell if the programme will make a difference to our little River. There is a lot more emphasis on his physical behaviours & physical exercises than we expected, & not a huge amount of focus on his social & communication needs which we feel is what we should be focusing on, but I think Brainwave's theory is that by dealing with his sensory issues we can then focus on all the other stuff. I guess we have nothing to lose & everything to gain at this point so we'll give it everything we've got & keep our fingers crossed.

A wizard in a Muggle's world

Today we had the Educational Psychologist visit us at home. She was really lovely, & asked lots of questions whilst observing River. River spent most of the time standing by the window, looking outside. He also looked out of the corner of his eye at the living room lights a lot, then spent a while spinning some cake boards over & over again. He ignored us when we called his name repeatedly. At one point, he managed to pull a pile of video cassettes on top of himself & burst into tears, so I picked him up & cuddled him- & he just pulled away & was desperate to get away from me, getting no comfort whatsoever from me. This is typical of River, so it was quite convenient that it happened in front of the Ed Psych. We then put on some Thomas, & River immediately ran up & down the room on tiptoes, flapping his arms & clenching his fists.

She talked quite a lot about Aspie's (Asperger's) & high-functioning autism, so I got the impression that she agrees that River's on the spectrum. She described Aspie's as "wizards in a muggle's world- very clever, but just not understood by the rest of the world" which I thought was such a lovely analogy.

I said that I was concerned the paediatrician may say that River's too young for a diagnosis, or disagree that he's on the spectrum because he makes very good eye contact but the Ed Psych said she'd seen young children diagnosed who were very similar to River. Also, if we're unhappy with the paeds decision she will help us get seen by a different one who may be more experienced with very young children.

It was sooo lovely to have somebody agree with me, & talk about the help available long & short term, but at the same time it always leaves me with a heavy heart as I still desperately want to be proven wrong- although really, I know that won't happen :-(

So she's sending her report to the paed, health visitor, GP, & a copy to us.

GREAT NEWS: We're on the waiting list for the Brainwave programme (http://www.brainwave.org.uk_) & were looking at July before a slot was free- however, they've had a cancellation & we're now having our two-day assessment in TWO WEEKS!! Can't wait x